This blog is about our 5 year old little boy Seth and his battle with Severe Combined Immune Deficiency (SCID). At the point of beginning this blog he is being considered for a second bone marrow transplant in order to save his life. My aim is to provide a real account of his history and progress through diary entries, pictures and videos showing that the boy makes the most of his bubble!. I, his mother, will be the main contributor to this page, but its not about me. Comment, ask questions, do whatever you please this is not my page but ours. I hope that this provides others with information on tackling a condition that 30 years ago would have lead to death. As well as giving family and friends a place to keep up to date with the news of his journey. #wearyellowforseth

T+127

So, it’s been 230 days since Seth was admitted to hospital this time. So much has happened in those 7 and a half months. I think we have a different child! A child that is happier, more content, taller, healthier and who feels like everyday is less of a battle.

Then and now. The photo on the left is the day Seth was admitted to hospital. The one on the right is now.

We still have a journey ahead of us and no one knows yet what challenges we will face. We still do not know if Seth’s body is able to educate the new cells, we still do not know what the GVHD in his skin is going to do or if it will respond to treatment. But we have come so far.

Seth’s consultant gave a good analogy- “you can put the champagne in the fridge, but don’t drink it”. We’re not at the ‘job done’ stage yet.

Our connection with Newcastle is far from over. We have to go back to Newcastle weekly to start with because he needs that monitoring. The doctors are still not 100% happy. But they are happy enough that he can finally come and live in his home with the rest of us!

Some of our friends decorated the house for Seth’s welcome home!

So what is the first thing you do after 7 and a half months away from home?

Although he is home he still remains in isolation. He is not allowed any contact with children, and only contact with well adults. He’s allowed to go out but not to busy or enclosed spaces, and he is not yet back to school. In England yesterday was the start of the school year for most people. But there was no obligatory photo of Seth in his school uniform. Hopefully we will be posting that in the new year if all goes well!

Seth is so excited to be home. He discovered toys in the play room that he hasn’t seen in a long time, got to see our family dog, play with his brother, and simply sit on our sofa eating popcorn watching his favourite TV programmes!

And then of course SLEEP IN HIS OWN BED!!!

Whilst daddy, who has also not been home in 230 days, got to put some storage together for the toys so the playroom could be safe and ready for the boys in the morning!!

Important construction

Argh the mess!!!!

Finished and ready to play!!! Phew!!!

We know our journey is far from over. It is not the first time we have come home hoping for a bright and easy future for our boy. But today is good, we will deal with tomorrow when it arrives!

Thank you to all the staff at the Great North Children’s Hospital in Newcastle Upon Tyne and the Bubble Foundation – you guys got us this far and kept us together as a family. Thank you.

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50 thoughts on “T+127”

Such an incredible difference between the “then” and “now” photos! Seth has really taken on his superhero persona!

Welcome home, Dear Seth! I am so glad you get to see your dog and be with your mummy and daddy in your own home and get to sleep in your own bed. Thank you for taking the whole world along with you on your journey! It makes me so happy to see your happy, sunshiny face! Be well, dear one, and keep us posted on how you are doing! Hopefully soon you will be back in school with friends! I am so, so happy for you!

Well done Seth, you are my hero !! You have been very brave and are lucky to have such a loving family. I know you will continue to get bigger and stronger. Lots of strength and love to you Seth and your family. X

Thank you so much for sharing his incredible journey with us…he is an inspiration…I felt so badly reading your updates, especially when you posted the pics of his lil hands…very happy to see how far he’s come and how much healthier he looks….

Seth….. YAY!!!!! You finally got the chance to go home. All of your friends have been reading what you write all been praying for you. This is probably the best news we have heard in a long time. Very glad that you are feeling better and stay one step at a time and God is going to get you well!!!!!

Amazing! Thank you so much for sharing this wonderful moment with all of us! Your Seth and entire family have taken the world on this journey … So grateful to know he is is a good place and praying his climb is steady and upwards! Home sweet home! Hugs and support from Memphis, Tennessee. 👍

What a way to wake up at 5:55 a.m. this morning.The very first thing I see is this post to make my holiday weekend(Labor Day) amazing! The little boy that has brightened my days every day for the last 200+ days has finally gotten to his home!!! Again, I can’t tell you how much joy your family has brought to out lives. It is been filled with sad tears, scared tears, and more than anything happy tears and love. Thank you again Leanne and Nik for sharing your “Little Hero” with us. God Bless all of the wonderful Doctors, Nurses and everyone who has had anything to do with the special little boys recovery. Every prayer, every posting, every piece of yellow clothing, obviously made a difference for Seth. Truly, the world needs more acts of love and support like were shown to your family. I am just so glad that I had the opportunity to be a part of it. Enjoy everyday with your family Leanne!! You are truly an Angel. Love you my little Seth!!! Hugs and much Love from South Dakota, USA!!!!!!

Been following your story iv also had a stemcell transplant and have gvhd but settled and under control… 10 years post transplant for me now, so happy to hear that Seth is home and wish him all the best xx

God bless Seth and the whole family! You continue to be in our daily prayers, and God knows how many people around the world are praying for such a BRAVE and wonderful little boy who is moving slowly towards the goal of being just an adorable little boy! I just pray for the day that we receive an update telling us he is just a happy and healthy boy who went through a tremendous experience when he was a very young lad. God Bless, a faithful prayer warrior in the U.S.A.

My name is Julie Eddlemon and I live in California, USA. I’ve been following all of your posts since the first message I saw posted on Facebook “Wear Yellow for Seth”. I posted a picture of me wearing a yellow hat and holding up a message written in yellow that said God Bless Seth. I’m so grateful for Seth and your family that he has improved so much. I know you still have further to go on this journey and my prayers will be with all of you for continued healing. God Bless all of you and please give a hug to Seth for me. Also, thank you for continuing to share your family’s journey with Seth.

HOME SWEET HOME! How sweet it is , especially after such a long hospital stay. I truly understand as my son spent many months in the hospital, the longest stretch was about 7 months. Seth is an absolutely beautiful boy, through and through. I am so glad that he has a wonderful mom and dad and an adorable little brother. I am sending love and strength as you continue on this journey with your little hero.

Wow!!! So amazing and great to read that my buddy Seth can go home and start thinking again of a great life ahead!! Thank you for sharing with us your journey…. This time tears of joy showed up reading your blog! I keep praying for this to be the real start of a new, happy and healthy beginning!!! =)

You do not know me but I’ve been following Seths story for quite some time, little did I know that we would also end up here in the bubble unit of the RVI, we are now T+7.

It’s great to hear that you have made it home! I bet it feels weird being in your own house. I hope you are all settled now and I will keep myself updated on this page. Sending our love from the bubble. Stay strong.

It is since the event #wearyellowforSeth I assiduously follows the story of Seth. Your concerns, downgrades, upgrades and transplantation and all the difficult stages of chemotherapy. I am much attached to your family through your blog, facebook and instagram. And it is with great emotion and joy that I discover in September only good things for you and Seth.

I really wish you all the happiness in the world. Seth is an example of courage and strength. I send you thousands of kisses from France. ❤

Yesss! Welcome home love! I’m so happy for him and the whole family. I’ve been following his story since #wearyellowforseth and I’m so happy he’s finally home. Please tell him he is loved all over the world. Hugs and kisses from Peru.

What a superstar you are Seth. I’m watching you being a big,brave boy on the TV right now. I cannot imagine what you’ve all been through and how you’ve all coped. You are truly inspirational, I’ve been moved to tears watching your story. Wishing you all a long and happy future. Much love x

I have just seen Seth’s story on BBC 1 and I am so pleased that you have created this blog about Seth’s progress. I’m so happy to see that Seth is continuing to get better. He is such a brave little boy and an inspiration to us all! He shows such strength and determination – it’s just incredible. You’ve been through such a tough time and I wish you all the very best for continued positive results.

I have been praying for Seth and your family for months now! God is so so good! God bless you! I’m so glad to see that Seth is doing better. After months of reading your blog I feel like somehow Seth has also become a part of my life. He lingers in my thoughts throughout the day – “I wonder if Seth is doing any better.” I have shot countless mercy prayers upon Seth to the Lord and the Lord has provided faithfully. All glory be to Him. I will continue shooting prayers your way. He’s not done with you yet!
God bless you and your family and precious Seth ❤

After so many months of reading your blog and being moved so many times by your family’s struggle and Seth’s illness I almost feel like he has become a part of my life too. I find myself thinking about him throughout the day and wondering how he’s doing half way across the globe. I have shot countless prayers for Seth and your family up to the Lord and He has faithfully provided. All glory to God! His love is so great and I am confident He is not done with your family yet. I will continue to pray for precious Seth and your whole family. So glad to hear he’s finally home. I cannot believe the love I feel for people I have never met – your story is powerful and moving and has the ability to provide hope and faith for so many people. I look forward to your next post! God bless you all.